Vital Decisions, where counselors help terminal patients face end-of-life decisions, is a hushed place, filled with the murmur of soothing voices.

Emma LeeWHYY

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Originally published on August 28, 2014 7:21 am

Imagine you're at home. You have cancer. You just had another round of chemo, and the phone rings.

"My name is Kate. I'm a health care counselor," the gentle voice of the caller says from her cubicle in Cherry Hill, N.J.

This is not a typical telemarketing call. She wants to talk with you about your serious illness and, eventually, if you're ready to think about it, what you'd like to have happen at the end of your life.

Kate Schleicher, 27, is a licensed clinical social worker. At the start of the call, she knows almost as little about you as you know about her. Except she has your phone number, she knows the name of your insurance carrier (the insurance company provided your phone number), and she knows that you're pretty sick.

"The main goal with us talking is to make sure that you know what's important to you and that your care aligns with what's important to you," Schleicher says, "so that things go the way you want them to."

Schleicher is one of 50 or so counselors working for a company founded in 2008 called Vital Decisions. The firm represents roughly a dozen insurance companies nationally that want to, when appropriate, start discussions with beneficiaries about end-of-life care.

The effort is part of a recent wave of initiatives aimed at fostering these tough conversations.

Vital Decisions, based in New Jersey, first reaches out via a letter, though patients rarely respond; after that, the company's counselors essentially cold-call patients to offer counseling on behalf of the beneficiary's insurance plan. The phone sessions, funded by insurers, may span months, with each individual session with the patient or family members lasting an hour or so. Federal privacy rules permit this sharing of patient information with subcontractors for certain business purposes. Vital Decisions handles about 12,000 such cases a year.

"When you say that getting better is the most important thing on your mind, what does that look like for you?" Schleicher asks a Rhode Island man in a typical phone call.

Being able to breathe without an oxygen machine, he tells her. Schleicher repeats that back, then continues: "Breathing — OK. I also hear concern from you that 'I don't think that's necessarily going to happen.' Has someone told you that, or is that your own feeling?"

The call lasts about 15 minutes. Schleicher asks the man if it's OK to follow up, in a month or so. The hope of this program, she says, is to build a relationship with the patient over the phone, so he'll be comfortable discussing his situation and his goals with her and, ultimately, feel empowered to communicate those goals with others — his family and his doctors.

"The accepted norm in terms of the role of the individual who's going through this advanced illness experience is to be passive and be along for the ride, not to take charge, not to take control and ask for help," says Daitz.

Meanwhile, navigating the medical system and figuring out your priorities can become increasingly difficult as your disease progresses, he says. "So when you're faced with a set of choices — none of which represent a really good choice — you become ambivalent."

To underscore this reality, here's a partial transcript of another phone conversation (released by Vital Decisions with the patient's permission) between a patient and Ariana Noto, another of the firm's counselors:

"I have a malignant brain tumor," the man tells Noto. "I've been fighting it for over a year now. The meds make me dizzy, and when I'm that dizzy I can't drive, I'm trapped in the house. I'm going nuts."

"That's a lot. I'm so sorry to hear that," she responds.

Within minutes the man is confiding information he may not have told anyone else. His meds make it difficult to function and do simple things like sitting around a table with friends, having a beer.

The two talk about what he understands about the effectiveness of his medicine. He's not sure. They go over what he might want to clarify with his doctor.

"You can control how much treatment you want and how you want symptoms to be managed as it does get worse," Noto says.

"But I can't talk that way with my son in the room," he tells her. The man thinks his son would always insist that he keep trying, keep fighting.

Daitz says jump-starting unbiased, honest discussions of end-of life care among family members early on could improve the quality of life for patients in the final weeks and months of an advancing illness.

The topic is sensitive, but Daitz says insurers and patients are more open to addressing it now than they used to be. And the effort to reimburse doctors when they conduct these conversations recently made a comeback in Congress, after an earlier uproar several years ago and false accusations that proponents were trying to authorize "death panels." Daitz well remembers those earlier, unsuccessful attempts to add reimbursement provisions to the Affordable Care Act.

"No one ever accused me of having good timing," he says.

Talking Freely About What You Want

The goal of these conversations, Daitz says, is to get to what the patient wants. That may be the most aggressive care possible, or just the easing of symptoms. Studies show that when patients are able to have these conversations, and understand their various treatment options, they often choose to have less aggressive care.

Daitz says such conversations have another benefit: reduced costs. By his own rough estimate, the company's services have resulted in about $10,000 less in health care spending per patient, which, by extrapolation, could translate to about $100 million less nationally in 2014.

Still, some people are wary of the company's approach. Dr. Lauris Kaldjian, professor of bioethics at the University of Iowa, is concerned that the counseling is solely on the phone — the social worker never actually meets with the patient and family. "If you don't have enough knowledge about what's actually going on with the patient," he says, "it would actually be irresponsible to pretend to have discussion that depends upon such knowledge."

Plus, end-of-life decisions are hard to keep totally neutral, he says, adding that he'd like to see full transparency from insurers and the company to guard against any bias creeping into the sessions.

Dr. Robert Arnold, who heads the palliative care division at the University of Pittsburgh Medical Center, says he thinks that insurers may be well-situated to address the communication disconnect, at least while some doctors and others who deliver care work through their own discomfort and improve their skills. He sees companies like Vital Decisions as part of a larger trend.

"Would I prefer that we live in a health care system where doctors, nurses, nurse practitioners and social workers who knew the patient were having these conversations? Yes," he says, but adds, "This is better than what patients have currently been getting."

It is especially hard to talk about death when someone in your family is near the end of life. It's difficult to discuss their care. But, talking it through can improve the quality of life for patients and their families.

Elana Gordon reports on how one company has made a business of starting those conversations.

ARIANA NOTO: My name is Ariana. I am a health care counselor.

ELANA GORDON, BYLINE: Here's the kind of conversation that Ariana Noto has every day from her cubicle in New Jersey.

NOTO: It's up to you if you want to tell me how you've been. I hope I can help you in some way.

UNIDENTIFIED MAN: I have a brain tumor - a malignant brain tumor. I've been fighting it for over a year now.

GORDON: It's the recording of a real client on the other line, speaking from his home and replayed with his permission.

UNIDENTIFIED MAN: The meds just made me dizzy and you know, I can't - you know, when I'm that dizzy, I can't drive, this and that - I'm just trapped inside the house and I'm going nuts.

NOTO: Jeez, that's a lot. I'm so sorry to hear that.

GORDON: Noto and the man have never met or talked before. She is one of several dozen counselors at a company called Vital Decisions. The company works through insurance companies to identify beneficiaries with advanced illnesses. After sending a letter, Noto and other counselors essentially cold call them and offer what they describe as non-directed, end-of-life counseling.

This initial 15 minute call between Noto and the man gets personal very quickly, as they discuss his treatments.

NOTO: But you can control, like you said, how much treatment you want to do and how you want your symptoms to be managed as it does get worse. So...

GORDON: It's this disconnect between the father, the son and the doctor, that CEO Mitchell Daitz says is an example of why his company is so important in health care right now. Daitz describes what typically happens to people as their medical options narrow.

MITCHELL DAITZ: When you're faced with a set of choices, that none of which represent a really good choice, you become ambivalent. So you don't choose and you're along for the ride and that's when the trouble starts.

GORDON: He says talking it through puts patients in the driver's seat. Daitz says the idea wasn't popular at first. The company is 6 years old and was initially competing with rumors of death panels.

DAITZ: No one ever accused me of having good timing. (Laughter) 2010 was what we referred to as the dark period.

GORDON: Daitz says insurers and people are more open now. Last year counselors handled 12,000 cases all across the country, including some for Philadelphia's largest insurer.

His company is part of a wave of initiatives aimed at starting and continuing these tough conversations. Some states have even started paying for them. Daitz says when these conversations do happen, there's another byproduct; reduced costs. That's because research is finding that when patients fully understand aggressive care, many prefer less of it. By his own rough estimate, the company's services have resulted in about $10,000 less in health care spending per patient.

DAITZ: $100 million savings to the health care delivery system for just the patients we worked with in 2014.

GORDON: Some are wary of the company's approach. Dr. Lauris Kaldjian, Professor of Bioethics at the University of Iowa, worries about the social worker, patient and family never actually meeting.

LAURIS KALDJIAN: Because if you don't have enough knowledge about what's actually going on with a patient, it would actually be irresponsible to pretend to have a discussion that depends upon such knowledge.

GORDON: End-of-life decisions are hard to keep totally neutral, he says. So that's why he'd want full transparency from insurers and the company, to guard against bias. Others in the medical field welcome the concept. Dr. Bob Arnold is with the University of Pittsburgh Medical Center.

BOB ARNOLD: I know that there are a number of very good companies out there trying to do this and so this is better than what patients have currently been getting.

GORDON: Arnold says it's unfortunate that doctors often have trouble discussing these important topics. More training would help. Daitz, with Vital Decisions, says he looks forward to the day when these conversations are taking place and his company is no longer needed.

For NPR News, I'm Elana Gordon in Philadelphia.

INSKEEP: That story is part of a partnership with NPR News, WHYY and Kaiser Health News. Transcript provided by NPR, Copyright NPR.

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